Reporting studies on time to diagnosis: proposal of a guideline by an international panel (REST)

BACKGROUND: Studies on time to diagnosis are an increasing field of clinical research that may help to plan corrective actions and identify inequities in access to healthcare. Specific features of time to diagnosis studies, such as how participants were selected and how time to diagnosis was defined and measured, are poorly reported. The present study aims to derive a reporting guideline for studies on time to diagnosis. METHODS: Each item of a list previously used to evaluate the completeness of reporting of studies on time to diagnosis was independently evaluated by a core panel of international experts (n = 11) for relevance and readability before an open electronic discussion allowed consensus to be reached on a refined list. The list was then submitted with an explanatory document to first, last and/or corresponding authors (n = 98) of published systematic reviews on time to diagnosis (n = 45) for relevance and readability, and finally approved by the core expert panel. RESULTS: The refined reporting guideline consists of a 19-item checklist: six items are about the process of participant selection (with a suggested flowchart), six about the definition and measurement of time to diagnosis, and three about optional analyses of associations between time to diagnosis and participant characteristics and health outcomes. Of 24 responding authors of systematic reviews, more than 21 (≥88 %) rated the items as relevant, and more than 17 (≥70 %) as readable; 19 of 22 (86 %) authors stated that they would potentially use the reporting guideline in the future. CONCLUSIONS: We propose a reporting guideline (REST) that could help authors, reviewers, and editors of time to diagnosis study reports to improve the completeness and the accuracy of their reporting. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12916-016-0690-7) contains supplementary material, which is available to authorized users.